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I usually feel better at night than when I wake up, but during the rare times when I’m ahead in the pacing game I can wake up feeling pretty ok (though not rested).

Sure, but one of those flaws is to say you are researching ME when in reality you are researching CF.

I would like to sleep 10 hours, but if I sleep more than 8 I mess up my fragile circadian rhythm in just a couple of days. The exception is sometimes when I’ve overdone it physically (but not too much, that’ll make me unable too sleep at all) and can do some extra hours without causing trouble.

@adambeyoncelowe I don’t mean it should be one or the other, I just believe it’s another factor in all this but it’s never mentioned. Maybe this is more relevant in Norway, where the discussion is so bitter and polarized even between patient groups (Recovery Norge/LP vs biomedical/NMEA).

Why is it never mentioned that maybe we are looking at two different groups of patients? Oxford applies to 1-2% of the population, while CCC applies to 0.1-0.2%. Even if we consider clueless physicians who don’t use the criteria correctly, and even if these criteria are not perfect, it should...

I couldn’t watch the whole thing (exhausted) but it came across as casual and approachable for people who are new to this issue, while still giving a fair picture of the controversy and how it feels to be a very sick person not being heard or taken seriously in the midst of it all.

The note writing... what a devastating visual.

First episode out today! I’m enjoying it very much so far:thumbup:

@Dechi congratulations! I hope you’ll share some of your experiences with moving and what helps make it easier! I’m very envious of you for already finding and buying a new house! We’re hopefully moving this fall and I’m already low key planning it all out so I can manage :geek:

Thank you, I needed a laugh to wake me up and this did the trick! :rofl: I don’t know why everyone hates Trolls so much, they are an endless source of entertainment.

If he needed documentation he wouldn't be a true believer now would he? :rolleyes:

That's funny, I've never seen any evidence of it being a psychological or social disease. I have seen plenty of evidence of it being a biological disease.

My arm is getting worn out from hitting refresh on Twitter, so much promising info:) Can't wait for the summaries and hopefully more actual publications soon. Packed audiences in the doctor/researcher section is maybe the best thing about the entire conference.

I think the hashtag is #MECFSconf18 is also widely used (couldn’t do a link from my phone).

I take it on an empty stomach, as it is very acidic and can cause some upset when taken with food. No problem on its own or with a couple of other supplements:)

The way they have to insert disclaimers in every sentence really undermines their message, though :) More people should be able to read between the lines and wonder why they can’t promise a single thing without also mentioning that it won’t work for everyone and not everyone it works for will...

@Little Bluestem they have an in-browser solution too. If you bought it on amazon you should find the book under “my content and devices” as well, where there is an option to open it online.

@BruceInOz there are many names from Norway, Sweden, the Netherlands, Germany, etc., but then PACE made a big impact all over Europe.

It’s on both iBooks (iTunes) and Amazon, which means through either one you can read it on your computer (@Trish ) (Edited to fix autocorrect errors)

Just bought in on Amazon, I’ll give it a try this weekend:) My cognitive abilities have not been impressive lately and PEMing hard today, plus traveling to our summer house for the long weekend, so no guarantees. Using all my tricks to get out of this alive, so hopefully I’ll get a few pages in...